Uncovering the roots of ‘at-risk’

Nearly everyone knows enough about their family’s health to fill out a patient history at the doctor’s office. Few think to go further. For those who do, taking a simple inventory of chronic conditions that crop up in a family tree can be powerful.

Take Susan Bell. The New Braunfels woman worked as a school nurse and taught nursing at the college level; yet, it never occurred to her to piece together a detailed family health history. When she finally did, she was surprised by patterns that emerged.

“It makes you sit up and take notice,” said Bell, who will share this family portrait with her children and grandchildren. “I am now more aware of health issues in my extended family. That gives me an opportunity to make lifestyle changes, and I’ll be alert to symptoms.”

With all eyes focused on the promise of genetic testing, the decidedly lower-tech strategy of recording which family member has what ailment is often overlooked. Yet, a thorough family health history is an effective tool that is easy to use and rarely costs more than a few minutes on the phone with far-flung relatives.

A medical anthropologist at the Long School of Medicine of The University of Texas Health Science Center at San Antonio has become an evangelist for family health histories, bringing them to the attention of people like Bell for the first time.

Nedal Arar, Ph.D., associate professor of medicine in the Division of Nephrology, began to appreciate how valuable family health histories can be – and how underused they are – while working on her own research, as well as on a study led by nephrologist Hanna Abboud, M.D. Both studies are funded by divisions of the National Institutes of Health and seek a genetic basis for diabetes and the kidney damage it causes.

As Dr. Arar spoke with patients in both studies, she was struck by how many knew diabetes clustered in their families but did not perceive themselves to be susceptible: “This underestimation of risk is very striking.”

And it’s not harmless: Those who fail to recognize a threat to their health might miss chances to counteract it. An informed patient can adjust diet and exercise, quit smoking and stick to a health screening schedule.

Seeking to spread the word, Dr. Arar reached out to the South Central Texas Area Health Education Center (AHEC), which brings deep experience in community engagement. Together, they started GRACE: “Genomic-based Research Applications for Community Engagement.”

The GRACE project encourages greater use of family health histories in the community. This pilot project is supported by the Institute for Integration of Medicine and Science (IIMS), which bridges research and clinical activities at the UT Health Science Center. IIMS is directed by Robert Clark, M.D., and funded through a Clinical and Translational Science Award (CTSA) from the National Institutes of Health.

The GRACE project began holding educational sessions this year – first on San Antonio’s West Side, followed by the one in New Braunfels. More are planned.

Each session begins with a video on the importance of family health histories. Afterward, participants use the “My Family Health Portrait” online tool from the U.S. Surgeon General (www.hhs.gov/familyhistory). Available in English and Spanish, the tool tracks health conditions through several generations.

“What we’ve found is that people want to be very precise,” said AHEC Director Paula Winkler, M.Ed. “They will sit in front of the computer, and they’ll call their sister or their mom.”

The inaugural session was hosted by the Edgewood Family Network, a nonprofit serving San Antonio’s West Side. The audience grew animated as family histories were assembled. “Once that door was open, and they started thinking about it: ‘Oh yeah, So-and-so died from this, and we’re pretty sure she had diabetes,’” said Alma Alvarado, co-founder of the organization.

Participants were encouraged to fill in blanks with relatives. “They had not, up until that point, really thought about asking,” Alvarado said. “We said, ‘You should know because this affects your children.’”

Dr. Arar is measuring satisfaction with the Surgeon General’s tool and learning how people use the information. Many share it with relatives, but it’s also good to bring to a family physician.

And while family health histories are easier and cheaper than genetic testing, it’s not an either-or decision. In fact, family health histories can be used to pinpoint who would benefit most from DNA testing, saving money and eliminating unnecessary tests.

A downside to family health history information: It can be fleeting. A friend of Bell’s who attended the New Braunfels session realized that much of her family history was lost forever along with relatives who had died.

Bell had an idea for preserving it: “Maybe we should place it in the family Bible along with the family tree.”